Once you read Stephanie's story, you will see she is the true definition of a Lyme warrior. She has spent ten years battling this illness. She has gone from being in a wheelchair to recently taking unaided steps. She has a warrior spirit that will take her to a full recovery. That's why her blog is called Stephanie's Total Recovery. With all the challenges she’s faced, her fighting spirit keeps her going. Read on to learn about her recycling program to help Lyme patients.
What is your Lyme story?
It's long and arduous and fraught with peril. It's uncertain when I was infected but I became severely ill in March 2006 (I recently earned my "Ten Year Lyme badge"). I went from being a fully functional independent adult to being incapacitated with severe system wide neurological and neuromuscular symptoms. It took years, wading through misinformation, controversy, medical research, and countless doctors, to confirm that I did in fact have Central Nervous System Lyme, and now even more years pursuing effective treatment. I've been wheelchair-bound. I've created extensive pre-planning to accommodate and anticipate my every need and to circumvent memory problems. I've been temporarily blind in one eye. I've become completely dependent on those around me, not being able to do simple things, like get the mail or drive. I've been denied insurance. I've been dismissed as a patient. I've spent $250,000+ and counting. I've been stuck and had lines installed more times then I care to recall. It's been a more than full time job, a 24/7 constant monitoring and recalculating. Every step is considered and every effort is in the direction of correction. I've committed all my remaining faculties to creative solutions.
You have been on this healing journey for a long time, what is a recent treatment milestone?
I've spent many years unable to do physical therapy of any kind. Some recent effective treatment has enabled me not only to get back to therapy but also to maintain my gains for the first time in many years. I now have taken my first unaided steps in years. My gains are slow but steady. I'm so excited, I've been sharing my progress here on YouTube. Eric Parrish (My physical therapist) is awesome.
You titled your blog, Stephanie's Total Recovery. What does "total recovery" look like to you?
Prior to getting sick I was very active: I worked in construction installing hardwood floors, I frequently traveled all over the country, I went to concerts, I walked in the woods, I went camping, I made furniture, I went dancing, I redecorated constantly, I took good care of my home, and I regularly spent social time with my family and friends. I was limited only by income and time, never by function. Stephanie's Total Recovery is being limited only by my imagination but I will settle for my health and function 100% restored, along with all the added benefits from applying what I've learned through this illness, such as, changing my diet, exercising, and taking care of myself daily. I will keep posting until I get there, updating on my progress and sharing the effective solutions I've found, in the hopes my success can help someone else.
You're partnering with the Ticked Off Foundation for the Recycle for Lyme Program. Tell us about it and how people can get involved:
Very little of my medical care has been covered by insurance. This has put crushing financial stress on my sole caregiver, my mom. She's leveraged our home, her retirement and her credit to save my life. Throughout my ten year career being a Lyme patient I have been on the hunt for fundraising solutions to offset these costs and enable me to continue to pursue effective treatment. We've done all sorts of programs all of which required people to either directly donate their money or use their money to buy something. I was discouraged that the only way for people to help was to keep handing over their money. I wanted those with limited resources to be able to help, too. My mom says there's always a way, and well, she is right. Exhaustive research revealed an awesome program. After several years of running the program independently, Ticked Off Foundation adopted the program and Recycle for Lyme - a nationwide recycling fundraiser was born. Recycle for Lyme allows people to save lives of Lyme patients in crisis simply by donating the type of trash anyone who bathes creates. This trash is recycled and reused instead of being sent to the landfill or incinerator and all at no cost to the donor. It's free to help. It's free to donate. Save the planet and Lyme patients. It's a serious win win. Sign up at Ticked Off Lyme Foundation: Recycle for Lyme and start collecting today.
What is the one thing that you have found most helpful in treatment?
One thing? Understanding how to walk that fine line of being persistent and willing to stay the course and listening to my body when it's had enough or something isn't working and needs to be tweaked. That has only come with experience, encouragement from caregivers, and attentiveness to body feedback. Another invaluable thing - Finding the right people - thinking, curious people, to help when others can't operate outside their box of current knowledge.
What are you most grateful for in your healing journey?
There is a list. I've been exposed to so many things and people I've never known and would have never known. I would have never had the opportunity and would have never taken this path had it not been required of me. I am most grateful to have learned some tremendously valuable life lessons from them. The people I might have expected to help may not be able and the people I never imagined came through in ways I would never expect. It can be delightful to have been wrong. My creativity, my values, my assumptions, and considerations have evolved as a result of the demands of Lyme and its effect on my life. No one survives alone, no Lyme patient heals alone and there is a world full of support for each and every one of us.
Is there a particular person who inspires you in the Lyme community?
I've developed a deep respect for every Lyme patient and caregivers. Lyme story after Lyme story shows people facing insurmountable odds, debilitating symptoms, and a startling lack of answers to their growing questions. Each person is living and struggling with something few people understand. Whether they are totally recovered or bedridden, their power is in their experience and creativity. With Lyme robbing some or nearly everything that makes us ourselves, it's empowering to know we always have something to offer that Lyme cannot take away. We are all valuable and can all help one another with even minimal actions. The Lyme community continually surprises me with genuine, loving people determined to help.
Please share a mantra or quote that inspires you?
Here's a couple I keep in view just in case:
"Don't wish it was easier, wish you were better. Don't wish for less problems, wish for more skills. Don't wish for less challenges, wish for more wisdom. The major value in life is not what you get. The major value in life is what you become. Success is not to be pursued; it is to be attracted by the person you become." - Jim Rohn
"All good things come to those who do paperwork." - Me
Note: This article was first published on The Mighty on June 21st, 2016
They say that illness comes into our lives at the right time. A diagnosis is a wake-up call. Our bodies are telling us something is out of balance and we need to make changes in order to heal. I say art comes into your life at the right time, as well.
I was diagnosed with chronic Lyme disease in January of 2016, after over 10 years of undiagnosed health issues. Around the same time, I discovered Hamilton: An American Musical.
Obsessively listening to Hamilton over and over has been a beautiful distraction from my constant pain. Sometimes I turn it on to provide me with the motivation to fight through my chronic fatigue to do a chore or two around the house.
Beyond that, writer Lin-Manuel Miranda’s lyrics have been an inspiration as I accept this illness and learn to live fully in spite it. Alexander Hamilton beat the odds over and over and that’s what I intend to do as well.
Here are five lessons about chronic illness I learned from the lyrics of Hamilton.
1. There's a million things I haven't done, but just you wait."
This lyric is in the title song of the musical, which chronicles Alexander Hamilton's young life when he escaped dire circumstances to reach America. He fueled the fire of his ambition with the wood of his tragedy.
Due to my illness, I feel like there are million things I haven't done. People who are ill often feel like life is passing them by. Chronic illness can either be your anchor or your springboard. It can drag you down or propel you into the person you were meant to be. When people who are ill find a way to live out their purpose, well, just you wait.
2. "Scammin' for every book he could get his hands on."
This line is also in the title song. One of the ways Hamilton was able to rise above his station was by educating himself. Chronic illness patients are information junkies. We read book after book trying to find anything to help us heal. Many people say having a chronic illness gives you a Ph.D-level of education in the medical field.
Chronic illnesses, like autoimmune disorders, or chronic infections, like Lyme, are said to be incurable. The only treatment is medication to manage our symptoms. There are thousands of books out there written by experts who offer different solutions, such as diet or other natural means of healing, and believe me I've read almost every single one. Like Hamilton, we have to be our own best advocate and learn everything there is to know.
3. "Look around, look around at how lucky we are to be alive right now."
This lyric is a present throughout the musical. It speaks to how lucky people were to be alive during the revolution and witness history in the making.
Gratitude is the antidote to any illness. We must take notice of our good fortune in the midst of pain. No matter what, we are lucky to be alive. In the late 1700s it was witnessing the birth of new nation; today, it could be thousands of things: modern conveniences, advancements in medical care, our friends and family, the list goes on and on. If you look around enough, you will always find something to be grateful for.
4. "I am not throwing away my shot."
This to me is the most important lesson from Hamilton. Seeing it is the masterpiece of the show, I'm guessing Lin-Manuel Miranda thinks so, too. Throughout the show, Hamilton continuously reminds himself not to throw away his shot.
I started doing this in my own life. When I'm having a bad day I tell myself not to throw away my shot. I might go out and meet a friend, write that blog post, or call my doctor about a new treatment. Anything to keep myself from being idle.
It is important to note that being idle is different from being at rest. Those of us with chronic illness need a great deal of rest. Rest is intentional, idleness is not.
We have one shot at this life, no matter what cards we have been dealt, and we can't throw it away.
5. "When you knock me down I get the f*ck back up again."
My favorite line from the entire musical. I swear, someday I’m going to hurt myself yelling this while driving in my car. It is sung/rapped by the character Hercules Mulligan (seriously, that was his name), a spy during the Revolutionary War and friend of Hamilton's.
If there is one thing people with chronic illness know about, it's getting knocked down. It could be a bad test result, a new painful symptom, or the sting of being left out of yet another social event. Sometimes it feels like we just can't win. And, you know what? Every single time, we dust ourselves off and get the f*ck back up again. We have to, we have no other choice.
If you're the one person who hasn't yet listened to this Pulitzer-Prize-winning masterpiece, I suggest you purchase it or stream it immediately. Let it transport you to a different time and place and, if only for a while, away from your illness.
"I am the one thing in life I can control, I am inimitable, I am an original, I’m not falling behind or running late, I’m not standing still, I am lying in wait.” - Hamilton: An American Musical
The 2009 documentary Under Our Skin is an incredibly important movie in the Lyme community. The award winning film is essential viewing for chronic Lyme patients and recommended for family and friends to gain a better understanding of the disease and the challenges of treatment.
After you've watched Under Our Skin, check out the sequel -- Under Our Skin 2: Emergence.
If the first film was enough to make you feel hopeless, the second film will give you a glimmer of hope.
The film focuses on two major themes. One, an update on the political issues surrounding Lyme disease, the CDC, and the IDSA. And, two, an update on the patients from the first film. The former continues to be discouraging and maddening, while the later proves uplifting and hopeful.
You may remember Jordan Fisher Smith, the park ranger from Under Our Skin. He returns in the second film and makes the following statement, which pretty much sums up the Lyme experience: "The greatest problem that I see Lyme people having is that they are set in a public health setting that is doing its best to deny them treatment. You're going to have to fight for yourself, while feeling awful and not feeling like doing anything."
You will see the issues with conflicts of interest within the CDC and the IDSA, which appear to be driven by financial interests.
At one point in the story a scientist with promising research is ordered to shut down his program. Shutting down research? What could be the harm in more knowledge? There are clearly things the CDC doesn't want people to prove, because then they will have to admit they were wrong.
Jordan Fisher Smith hits the nail on the head: "We believe ourselves to be a democratic society, but the facts are we're getting less and less democratic all the time and the wind is blowing more and more in the direction of the big money."
It's horrible to think at the center of all this are very ill people.
Throughout the documentary, we check back in with the patients from the first film 7 years later. Many of the patients are faring better physically following long term treatment; however, we see how this illness tears some families apart and brings other families closer together.
The patients discuss how the healing happens on all levels: physically, emotionally, mentally, and spiritually. Most importantly they are living proof that you can heal.
I loved this moment from Dietrich Klinghardt, MD:
"If you have Lyme disease, by my definition, it means also you belong to a tribe here on the planet that is more conscious and more sensitive and also more likely to do something once you recover that will be of benefit for all of us."
One patient from the first film is now a patient advocate and developed the website Lyme Less Live More to help people with Lyme. Near the end of the film she says, "You can get better and you will get better," to show despite the political issues surrounding Lyme, there are good doctors out there who can help you toward remission.
Unlike the first film this one is a little more difficult to find. You can purchase Under Our Skin 2: Emergence on YouTube, iTunes, or GooglePlay for $3.99. My library (Chicago Public Library) allows you to download it for free on the website Hoopla.
Or you can purchase a copy of the DVD on Amazon:
I'm hoping someday there is and Under Our Skin 3, in which the CDC and IDSA publicly apologize for all the damage done to people with chronic Lyme disease. But until then, we'll keep raising awareness.
"It is reasonable to expect the doctor to recognize that science may not have all the answers to problems of health and healing." - Norman Cousins
I'm Kerry and I was diagnosed with chronic Lyme disease in 2016. This is a positive space for those of us coping with Lyme disease and other invisible illnesses.